“Affected” by Autism

 

wonder

To the father who writes on his blog “my son is affected by autism.”

To the professional who tweets “ . . . families affected by autism.”

To the mother who declares at a social gathering her child is “not defined by Aspergers.”

By now, you are likely well aware of person-first terminology, such as “person with autism” or “person with Aspergers, “ and identity-first terminology, such as “autistic person.” The terms are used interchangeably in the autism community, dependent upon personal preference. Sometimes the terminology is altered when addressing a wider audience, as you will note in this post.

What you might not be aware of is that autistics have been discriminated against historically, first institutionalized for being perceived as feeble-minded and out-of-the-norm, and later stereotyped by the mainstream media as individuals that are incapable of empathy, imagination, relationships, compassion, and the like. We have been told what we are and who we are by self-declared professional after professional for decades—those who claim to know what it is to live on the autism spectrum, without ever being autistic themselves.

To date, autism conferences will host thousands. And who will be the presenters? Non-autistics. Of course, there is the growing trend of the token autistic spokesperson on stage; nonetheless, still surrounded by the “professionals.” But this is changing. It’s no longer acceptable. It’s no longer about who will draw in the most crowd and the most money. It’s finally about the autistic voice.

And we are at last, as a collective, finding our voice.

In that wave of claiming who we are, from our perspective—in our proclaiming of what it is actually like to live as an autistic individual—many autistic self-advocates have embraced the word ‘autistic.’ In this way, we are not running from the degradation and falsehoods, but proudly proclaiming: “I am autistic.” It may seem counter intuitive. But indeed, the act of accepting the word “autistic,” in and of itself, makes something once untouchable—now held. For you see autism is not a disease—though many think it so, or at maximum treat autism like a plague to be eradicated. Contrary to mainstream belief, perpetuated by mass media profiteering of the tagline of ‘autism,’ Autism Spectrum Disorders (ASD) are not a mental illness. Though ASD falls into the barracks of the DSM-V, ASD is a neurological condition.

I chose the word “condition” with caution, because as an autistic woman, I do not choose to see myself as having a disorder. Nor do I choose to see the thousands I know, who identify with being Aspergerian or autistic, as having a disorder. We are not made wrong, or wired wrong, or something to be fixed, or worse—eradicated. Though the word“disorder” definitely has its place and purpose, particularly in obtaining much-needed services, for instance, in partaking in mental health therapy sessions to process what it’s like to be autistic in this society.

We are different. Innately born to see the world through an alternate lens. And through my anecdotal (non-science based) evidence, a result of corresponding with upwards of 10,000 individuals touched by autism, I am able to conclude that a vast majority of autistics are greatly empathetic, kind individuals who do not understand manipulation and bullying, and seek to be the best person they can be. In my experience, few, if any, autistics set out to intentionally fool or hurt anyone. In that light, our lens, though markedly different from the mainstream, is effectively brilliant in its capacity to view and move through life.

The issue we take, in most circles of Aspergerians and Auties, is with the trials and tribulations parents face and share publicly in raising such “anomalies” (children with autism). Interestingly enough, if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism. Nor are we seeking sympathy. We understand what our child is experiencing. We understand the torment of living in a world, where you not only feel like you don’t belong, but are told from the authorities that be (parents included) that your condition, your being, your very existence has “affected” everyone around you.

It’s not easy. No doubt. To raise a child on the spectrum. But life isn’t easy. There are parents I know with children with cerebral palsy, with severe learning difficulties, with life-threatening conditions, with low life expectancy, but they don’t say (ever) how their child’s condition has affected the family. Why would they? Why would they lay that guilt and responsibility upon a child who has no choice but to be what they are?

Perhaps you think that their circumstances are different, that these aforementioned parents of special needs children have accepted the situation, that they have realized and come to terms that there is no “cure.” Well, there is also no “cure” for autism. In most cases autism is a genetic condition, and in all cases a neurological condition. Anyone claiming to have cured themselves or their child perceivably didn’t have autism to begin with. I can trace autism up my family tree. What makes me think all of a sudden I shall be different from my ancestors? And why would I want to be?

Some children are misdiagnosed with ASD. Some adults are too. In my opinion, those are the ones that are miraculously “cured.” And if that is not the case, then, like my son, the child (or adult) matured and grew into himself, establishing techniques to function better in the world. But inside, beneath the skin, is the same person, the same brain, the same autism. How does it feel when a prominent celebrity (or common person) proclaims with pride their child no longer has autism and is cured? It feels like I am invisible again. That I am not recognized for my way of being. That my way of existing is once again wrong.

Autism isn’t something that can be erased. Yes, measures can be taken with supplements, diet, etc. to improve functioning and cognitive processing. Huge improvements can be made in the ability to feel accepted and loved and to gain a sense of belonging. And also, strides can be made in functioning better in the mainstream. Yet, overall, it is not that we, as autistics, as people with autism, are affecting the family or society; moreover, it is that the person on the spectrum is affected by societal norms. It isn’t that we are the puzzle or that autism is this separate entity beyond me that is the puzzle; it is that the world is a puzzle. Just look around you.

Circling back to remedies and cures: my good friend did everything she could do for her son on the autism spectrum, all the diets, supplements, chelation, and so forth. All the latest remedies. He progressed brilliantly. On the other hand, I took another route. I accepted, I watched, I immersed my son in creative endeavors. I homeschooled, and I taught him about communication, society, and psychology. I taught him about cruelty, injustice, and trickery. Both our sons are around the same age, and both are functioning at independent levels. My son, who is now 17, is to attend junior college and finish his high school education there.

I didn’t incorporate any biological remedies, medical interventions, or supplements or strategies. Basically, I let my son be himself and taught him as best I could about this world. When he was a small lad, he never took a nap. He didn’t fall asleep (in the hallway) until midnight. He couldn’t stay in mainstream school. He was violent. I couldn’t leave him alone for a minute. He had Tourette’s and would say “fuck, fuck, fuck” at children’s parties. He had stimming that was not socially appropriate. But I never felt the need to publicly bleed out my woes to the masses about the personal life of my son. Mostly, I cried, I carried on, and had faith that he was gifted to me for a reason. (Yes, I sought out support, but behind closed doors or through somewhat private, sheltered networks.)

Ultimately, my son with autism taught me self-love through the act of accepting others unconditionally. And really, there is no greater gift than that. For me, it was worth the exhausting struggle.

I am defined by autism because I want to be, because by embracing my autism I am embracing myself fully. I cannot separate the way my brain works from the rest of me. I leave it up to my son about how he wants to define himself. I will never tell him how to perceive autism. I imagine his perception will be ever-changing.

I have not and will not proclaim my family was affected by my son’s autism; nor will I say my son is affected by the trials that come with autism. There is not some outside boogeyman disease, illness, or even condition making our life hard. Life is just hard, sometimes. I have chosen to believe life has a purpose, situations lead to growth, happenstance makes me stronger, wiser, and more compassionate. I choose not to make “autism” my enemy. I choose not to place blame on something outside of myself. Instead, I see autism as my son’s badge of courage and my badge of faith.

 

For those that are considering they might be on the autism spectrum, I have written and/or gathered some resources that might be of interest:

Professionals Often Miss the Mark in recognizing autism in adults

There are specific traits that might be prevalent in the autistic adult

Getting an official diagnosis or recognizing ASD in one’s self can have beneficial results

An extensive resource list  of various autistic professionals, advocates, artists

More traits of those of us on the autism spectrum 

10 Myths about Aspies 

10 Myths about Females with Aspergers Syndrome

Everyday Aspergers Book  on Amazon 

About the author of this article: Samantha Craft is the author of Everyday Aspergers. Ten Years in the making, Craft’s book is receiving positive reviews and support from professionals in the field of autism and autistic individuals. Craft is in touch with thousands of autistic individuals throughout the world. Her book is available on Amazon in soft back and as worldwide e-book in many countries.

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39 thoughts on ““Affected” by Autism

  1. I understand the points being made here but I would say that sometimes parents (without autism) who have autistic kids might recognise that their kids need outside help (resources of some kind that the parents can’t provide alone) and the only way they can get that help is to make it public. And also, sometimes by going public with tales of how life is, it helps others know that they’re not the only one feeling that way and might suggest solutions to difficulties. And the same applies whether it’s autism, a physical disability, a fear of heights, a difficulty in learning to drive, basically anything that makes life harder at times. Your friend was trying to do the best she could for her son in the only way she knew how. Maybe she was right, maybe not. But better she cared enough to try something than to give up and do nothing. If you don’t have an autistic brain then you don’t necessarily understand however hard you try, any more than an autist can necessarily fully comprehend a neurotypical way of doing things. We just have to do the best we can at any given moment with the best of intentions.

    Liked by 2 people

    1. agree with all you are saying entirely
      Different between reaching out for support and making it about the parent and their woes. One comes for a place of motherly love and the other attention-seeking. I admire my friend. I am glad she found answers that worked for her.

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    2. Well, there’s a reason for that saying about the road to hell being paved with good intentions… I mean, you can have all the best intentions in the world, but it doesn’t mean you aren’t doing harm anyway. And that’s not an accusation, it’s not a call for blame; but a call to *listen* – really listen – and examine how we can do better.

      Because we need to do better. There are ways to discuss the legitimate issues around getting support without contributing to harmful, ableist stereotypes about Autistic people, but 99% of the discourse in the (non-Autistic) parent & professional communities doesn’t do that. Instead, the general focus is on how hard and awful things are for the parent/caregiver, and – whether you intend it or not – the Autistic person gets the blame. As an Autistic adult and former Autistic child, I’ve seen first-hand how we internalise this message. I’m broken, my brain doesn’t work right, I need to be fixed, I cause all my family’s problems… believe me, this kind of narrative is a big reason why many of us adults are as messed up as we are. Language matters.

      We also deserve the same sort of respect and dignity as anyone else, which means not splashing humiliating details about our personal struggles in public forums. I’m talking about blogs with photos and real names; stories with graphic details about our meltdowns or bathroom habits (yes, really); or worse, videos. It’s one thing to film a child’s behaviour for the purpose of showing to their doctor, quite another to post it to Facebook or YouTube under the guise of “this is what it’s like”. I know it happens often enough in the parent community at large, but *especially* in the disability parent communities, and it is *not* okay. Like I said, there are other ways to reach out for support without throwing us under the bus.

      And, omg, do we need more representation from actual Autistic voices. It’s important. Imagine going to a conference on women’s issues where all the speakers were men, talking about what it’s like to be female, to have periods, to have the pain of childbirth. Imagine every women’s organisation being run by men and maybe only a token woman on the board… if you’re lucky. Imagine every conversation about women’s issues being about how much grief we give men, and society rewarding and encouraging those who act more “manly”. (Yes, I know a lot of this already happens, but bear with me…) Think about all that, and if that sound okay to you. Then think about how Autistic adults and Autistic parents of Autistic children must feel having to navigate an ‘autism culture’ that doesn’t include us.

      Agreed: “We just have to do the best we can at any given moment with the best of intentions.”. And when we know better, we do better, right?

      Liked by 2 people

      1. I totally agree that public blogs that put a lot of inappropriate children’s details out there are wrong (and that’s, like you say, not just autistic / disability etc. but generally), but that’s the whole ‘me, me, me, look at me’ attitude that’s so popular these days. There are some really good blogs by autistic people and we need more of them. And yes, autistic speakers too.
        But my point was that if someone is trying to do their best (whether they’re autistic or neurotypical) then they need support and encouragement, not to be told that they’re doing it wrong. I spent my whole childhood and then a large part of adulthood trying so hard to get it right and never quite succeeding, and it would have made a big difference if I’d had some encouragement. (And getting my Aspie diagnosis 25 years earlier would have been great too because maybe then someone would have known to ask me if I needed help!) It’s very difficult navigating a world where we don’t fit in, so when someone is trying to make it easier then we need to grab that with both hands. Even if they’re getting it wrong. The fact that they want to get it right is what’s critical because when we steer them in the right direction we’re all winners. It’s the ones that don’t care enough to try that are the issue. The ones who could make it easier just by thinking a bit and being clearer in their communication. By being logical (if only they could be more logical!!!). By thinking about others for a minute. By not assuming that their way is right for everyone…. (Not that I’m finding certain illogical, ‘this is how we do it so you can too’, people a tad frustrating at the moment or anything you understand?!)

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  2. I echo a resounding yes as always! This hit home. I am so glad we as collective are taking back our own stories, and individually our voices. united yet individual.

    Also I was going to ask- I don’t have a kindle so is the paperback version of your book going to be available on amazon canada? What would be the date for that? I def want to purchase it!

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      1. I am not on instagram ever lol I am on twitter, facebook and goodreads. I didn’t get the hang of instagram.
        Oh you can email me from myspectrumsuite.com Go there to see contact email :)))

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  3. Great post. I have autism and have two children with severe autism. I must admit though that I don’t get hung up with terminology. It would be accurate to say our family was “affected” by my children’s autism, just as it is affected by my sarcoidosis (which you probably have never heard of). Still, I really appreciated what you had to say.

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  4. I have Asperger’s Syndrome myself, and I take offense to the idea that autism isn’t a disability or a disorder. It certainly disables me in a lot of ways, to the point where I don’t know if I’ll ever be able to support myself financially. And I’m on the higher-functioning end of the scale, so there are plenty of autistic people who are even more disabled than I am. Why do you seem to want to ignore us genuinely disabled autistic people, just so you can keep spouting your Neurodiversity screed? If being pro-Neurodiversity means outright ignoring the struggles of a large amount of autistic people, then doesn’t that mean that Neurodiversity is a bad thing?

    Liked by 1 person

    1. Agree with you quietdove. Hence I very recently wrote this post: https://planetautismblog.wordpress.com/2016/08/09/the-its-just-a-difference-delusion/#comments

      “if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism.” As an autistic parent to 2 autistic children, I do post anonymously on at least forum about the difficulties I go through and whilst I totally disagree with publicly naming, photographing or videoing your autistic child’s difficulties, autistic parents are human and need to express their stress too. So the above does not speak for all autistic parents.

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  5. Yes! There is a difference between what parents share with loved ones or in support groups and what they share on the internet. People may not always realize just how public that forum is, but it’s extremely public. The older I get, the more uncomfortable I am with parents blogging about their children, even children without disabilities. There are particular dangers for disabled children, in terms of stigma and things like that, but this may be a violation overall. How will it affect people whose parents regularly blogged about them when they grow up and find out that their childhoods have been on display for a potentially world-wide audience?

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  6. I respect everyone’s right to their opinion, but I would say that you seem as if you are speaking for all autistics here “you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism.” because as an autistic parent of two autistic children, I have just penned a blog saying quite a lot of opposites to what you state: https://planetautismblog.wordpress.com/2016/08/09/the-its-just-a-difference-delusion/#comments

    I anonymously discuss the difficulties of parenting my autistic children (I would never name them and strongly disagree with parents identifying their children or posting videos and photos about their meltdowns and other difficulties) on a forum. So you have made quite an assumption in what you have said.

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  7. Autism seems affect directly the personality of the human being while others disorders or trans-orders tend to affect indirectly…

    Is easy separate the schizophrenia from the ”patient” but seems pretty more complicated separate autism from the being.

    There is a diverse severity levels of the autism types, some subgroups will have greater challenges in their daily-life, others will be the otherwise, at least in non-subjective/social aspects, aspergers for example.

    You’re a high functioning autistic woman, you take the big stick, while many auties don’t.

    So i think will be subjective, case by case, to say

    this people have autism or

    this people are autistic

    in the same way we have gender disphoria i believe in personality disphoria, some people don’t few they are in the correct personality by many reasons, one of them, because their condition is far to be satisfactory to contribute to their hapiness.

    I like to describe autism such as ”syndromic condition”

    condition because it’s not normative nor exactly, directly pathological

    and syndromic because invariably display a mix of traits and symptoms or pathological traits.

    i also like to describe personality disorders or transorders such as mental extremities because most of it share the same universally conditional aspect, greater assimetry in their trait-combinations, for example, schizophrenia with their out of control-imagination and ideational-production, adhd with their out of control-impulsivity and missing-mindtype, psychopathy with their quasi-absolute lack of affective empathy or emotionality or out of control-imoral impulsivity and other ”gifts”, etc

    we have adapted non-sindromical autistic people**

    people with the same neurological condition but assymptomatic*

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  8. Hi,

    I Recently wrote an article about this subject (tangentially), using peer reviewed, clinical/journal articles and data. I illuminate some aspects about modern medicine, autism, and iatrogenic realities. I think this can give you (anyone) insight into biochemical/physiological processes. Peep my blog below. Thanks 🙂

    Paradigmshift101.wordpress.com

    -Badmash

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  9. Oh, my goodness! I have been an informal, behind-the-scenes advocate for and educator of Asperger’s Syndrome since my nephew was diagnosed four years ago. I have been amazed at just how uninformed most people are about autism/Asperger’s and how uninterested most people seem to be. I have just now (in the last three months) discovered that I am most likely on the spectrum as well (I’d actually bet my life on it, but since I’m not a professional female autism spotter, I say “most likely”). Since this realization, I have done a lot more reading about female autism (as opposed to the stuff I read when learning about Asperger’s so I could understand my nephew, which was mostly for and about boys). I, too, feel rage when I hear people say “autism epidemic” or “cure for autism.” This essay was powerfully written and oh, so interesting. Thank you so much, Samantha Craft (I originally found you on Amazon, when searching for anecdotal writings on Asperger’s in females)!! I feel like you are my feisty and very intelligent sister.
    🙂

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  10. This is a really beautiful article. I have a son with autism and he constantly challenges me to look at the world differently. I’m thankful for his influence on my life and thankful to read your article! Best wishes to you!

    Like

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